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Confusion

Do you review your notes from past doctor’s appointments? I do. Recently I scanned through old notes – both from my doctors and my daughter’s appointments these past six months.

Thinking back, when I was first given my lab results and a referral to a rheumatologist, I started reading about the ANA lab test and the implications of positive results. I read about RA and SLE. Neither sounded like a perfect match for my symptoms, but (despite being unable to give a concrete reason) I thought SLE was closer.

At my initial appointment with the rheumatologist, it wasn’t clear-cut to him, either. He said things like probable early RA, rhupus, mixed connective tissue disease, and atypical presentation. RF was negative, so to my relief, my PCP interpreted that to mean “not RA.” Only when my CCP came back with a strong positive a few months later, did I get a definitive RA diagnosis.

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It was nice to have a label instead of uncertainty, but I’ll tell you a secret: I never bought into the RA diagnosis 100%. Since denial is supposedly a common reaction to such a diagnosis, I tried to squash that hesitation and look at the fact that the test for cyclic citrullinated peptide antibodies is a pretty accurate test (both sensitive and specific) for RA – much better than the test for rheumatoid factor. If the lab report says I have it, then I must have it. BUT… there has always been that niggling little feeling that things don’t quite add up.

Recently (last week?) I read an article that got me thinking even more (but can’t find it now to provide a link). The line that jumped out at me was something akin to, “If the symptoms don’t seem to match, maybe you’re reading from the wrong page in your book.”

This is what led me to review my old notes. A few months ago, my rheumy said we’re going to stick with the RA dx, but mentioned undifferentiated spondyloarthropathy as a possibility. I started net-surfing, reading about other autoimmune diseases instead of just RA/SLE/MCTD, and found some startling information. I think the symptoms have differentiated themselves; I think I have PsA.

70% of people with PsA have psoriasis first, and the arthritis comes later. 15% of people are diagnosed with both psoriasis and PsA at the same time. There’s another 15%, though, who present with arthritis symptoms first, and only later do skin symptoms emerge; it’s very easy for PsA to look like RA.

Don’t laugh. Okay, laugh if you wish. I know I don’t have any medical training, and that my rheumatologist is an expert in figuring these things out. But with the spinal involvement and my response to the withdrawal/return of ssz, I don’t think she’s entirely convinced that this is RA. There’s a LOT of overlap in how these two types of arthritis are treated, so sometimes the right label doesn’t even matter.

I might have RA, too; it’s rare, but possible, for a person to have both RA and PsA (and kind of hard to dispute that strong-positive CCP). We’ll see. As it happens, I’m seeing two of my doctors tomorrow. I’m a bit nervous about what they’ll say, and the possible implications.

Rather than footnotes, I’ve added PsA links to my sidebar. They’re right beneath the RA resources.

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16 thoughts on “Confusion”

There are at least 8 members of my extended family and 1 member of my immediate family who have psoriasis; one cousin has PsA and we think another one also does.

Even though I have no signs of psoriasis, when I gave my rheumatologist an updated family history and asked her about the possibility of my having PsA and not RA, she said essentially that, either way, I have inflammatory arthritis and she would treat me the same. At this point, from my test results, it can’t be distinguished which it is.

From the symptoms, I think she thinks it’s RA, and so do I, odd though that sounds with the high incidence of psoriasis and lack of RA in our family!

Wow! Given that family history, PsA would seem to be a likely candidate for you. From what I’ve read, it can be very difficult to distinguish the two. Since there’s so much overlap in the treatment, it seems that doctors don’t always need to figure out which one it is.

In the U.S., there are biologics approved to treat RA that are known to also work for PsA. Unfortunately, since nobody has jumped through the hoops to get them FDA approved for PsA, insurance will cover them for RA but not PsA. So, from a treatment standpoint, at this time there are more options if the official label is RA. I really wish that doctors could just do their thing without insurance companies having to approve the treatment.

:) I’m hoping to do a few more posts about this, and one will be a comparison of the drugs used to treat. Enbrel, Humira, and Remicade are all approved by the FDA. Insurers are funny, though, so you never know what they’ll be willing to pay for.

I find the whole thing confusing (not your post, the number of conditions and how similar they all can be). When a doctor asks for my exact diagnosis, I always say I have no idea, my doctor thinks either sjogren’s or RA. Several doctors have tried to make other guesses, and really I just have no idea. My test results aren’t conclusive to rule anything out positively, and there is no definite label either. I guess I am in the wait and see how it definies itself kind of thing because with the many combinations of things (RA with sicca, maybe “just” sjogren’s, etc.) who knows. I guess as long as I am getting treatment and it is working to diminish symptoms that is all that matters. But I’d still like to know for sure.

And for the record, every time I have ever researched some medical thing on my own, I have figured it out correctly. I think sometimes you know, and if this feels right to you, it probably is.

Thanks for the post, Socks. I also wonder what I really have. I’m sero-negative for RA, but I have the symptoms. Since a lot of the issues are spine, hips, etc., my initial diagnosis is “seronegative rheumatoid varial types of arthritis with features of undifferentiated spondyloarthropathy, lumbar type”. The good news is, they treat whatever it is that I have the same as RA and it seems to help. I love your pro-active approach to health care and thank you for including us — and encouraging us.

@Tori- I agree; effective treatment is more important than the label, but it would still be nice to have the right label.

@Carla – Wow,that diagnosis is quite a mouthful! I sometimes wonder if these various autoimmune diseases would be easier to find the right treatment for if they were better defined instead of so overlapping. It’s good to hear from you; hope your shoulder is improving daily.

Conclusions: In a series of seven children at a single children’s hospital
diagnosed with idiopathic chondrolysis, clinical features and response to
treatment were consistent with psoriatic arthritis or JIA. Aggressive therapy
resulted in excellent clinical outcomes. The possibility that idiopathic chondrolysis
might represent an unusually aggressive form of seronegative
mono-arthritis should be considered in such patients.

I have odd nails on two toes (one on each foot). Sometimes they look very much like pix I saw on websites discussing PsA. This morning I asked my rheumatologist about it, but she didn’t think it looked like (sorry, I didn’t catch the word she used). They’re usually thick, yellow, and peeling/crumbly with weird waves instead of being flat. Sometimes they look awful, and once one of them fell off. They’re looking pretty good right now, though, so maybe it wasn’t the best time to ask.

I considered doing a post about it (went so far as to take photos) but decided that nobody really wants to see my toes!

Sometimes the only visible sign of psoratic arthritis is the nails. The above, which regarded hip degenerative changes in children, came from the long ACR pdf of the abstracts from this years convention. Later I saw one that said that methotrexate does not act as an actual “disease modifying” medication in PsA, but only mildly helps the symptoms.

They usually talk about pitting of the nails in PsA, which might be what your doc mentioned. My mom has a thumb nail that sounds a little like your toe nails, and I’ve wondered about PsA with her. It might just be persistent fungal infection. Not sure about the waves – are they horizontal? Might be evidence of past virus or infection or illness of some type. Though I don’t know about the nail falling off! If you do start leaning more towards PsA, it wouldn’t hurt to post that to see what response it might turn up. There is more in those abstracts about PsA, so search for key words like nails, etc.

Onycholysis, subungual hyperkeratosis, and pitting were all associated
with psoriatic arthritis on univariate analysis. Multiple logistic regression
showed that onycholysis remained strongly associated with psoriatic arthritis
with an OR of 2.02 while the other two types of nail changes no longer
showed statistically significantly associations. On follow-up 122 of the 183
patients were evaluated again. All types of nail changes had increased in
prevalence, with the overall prevalence of nail changes rising from 36% to
80%. Less than 4% of patients had all nail changes disappear from the first to
the second visit.
Conclusions: Psoriatic arthritis is strongly associated with nail changes.
Onycholysis may be more associated with arthritis than pitting or subungual
hyperkeratosis. Nail changes tend to progress and rarely remit. More studies
looking at the subtypes of nail changes in psoriasis and psoriatic arthritis are
needed to confirm these findings.http://www.rheumatology.org/education/annual/FinalAbstract2010.pdf